Hi Ragen, @virginia sole-smith referred me to this article and it is extraordinarily helpful. I'm presenting at an obesity conference next week and am advocating a weight-neutral approach to address health improvement--very helpful!!!
Would you be willing to discuss a condition I was recently diagnosed with called "o*esity hypoventilation syndrome"? My pulmonologist tried to refer me to an "o*esity specialist" and I shut that down immediately.
I'm having severe shortness of breath upon even mild exertion (but only exertion) and likely have sleep apnea as well. She basically explained to me, using her hands and arms to illustrate, how having extra abdominal adipose tissue makes it difficult for the diaphragm to function as it should. The "solution" is IWL, but I'm not convinced that works and would rather focus on healthy, sustainable habits instead, like increasing my activity level.
It's so freakin' hard to deal with doctors as a fat person and I didn't have the spoons to challenge her.
I'm so sorry you are dealing with this. As always, I'm not a doctor and I'm not giving medical advice. Here is what I found with some quick research into this.
. Hypoventilation syndrome is a real thing that can have many causes and happens to people of all sizes. When it happens to someone who is higher-weight there is a tendency to blame the patient's weight (in theory, the diagnosis of “obesity hypoventilation syndrome” can only be given after ruling out any other reasons, in practice that doesn’t always happen) and assume weight loss is the solution.
This is problematic both because there may be another reason for the symptoms and because weight loss rarely works long-term (including with the new weight loss drugs) and often ends with people regaining more weight than they lost (which, if the belief is that size is the issue, would actually exacerbate the problem).
If it were me, I would ask what a practitioner would recommend for patients of lower weights with this diagnosis. I would also make sure that any needed oxygen support is NOT delayed for a weight loss attempt but is begun immediately when needed. I would also ask questions about whether increasing strength/respiratory therapy might be helpful.
Here is some further information - though content note for weight stigma including stigmatizing terms.
Ragen, this is about the best thing ever. Thank you so so much! Would it be okay if I printed it to give to my GP when I have my annual in a few weeks? I'm worried about it because I've gained a good amount of weight since she saw me last year and I want to be prepared for whatever she throws at me.
I just re-read what I wrote and I like it that I used the word "good" in regard to my weight gain! The ability to see it that way to any tiny extent is all because of you and the other wonderful people doing this work.
Thanks so much Sharon, I'm so glad that this was helpful! Please feel free to print it out and use it in any way that supports you getting the care you deserve! I also have printable cards for what to say at the doctors office that might be helpful, you can find those here:
Ragen you are doing the lord's work. This is such a helpful list to have.
Thanks for including a link to Ragen's article in Burnt Toast!!!!
I love this! Thank you for putting this together.
Thanks Barry!
This is amazing! Thank you so much for this. I can tell I will return to this list often.
Thank you for this. It's is helpful to have such tools in our fat activist belts!
Hi Ragen, @virginia sole-smith referred me to this article and it is extraordinarily helpful. I'm presenting at an obesity conference next week and am advocating a weight-neutral approach to address health improvement--very helpful!!!
Would you be willing to discuss a condition I was recently diagnosed with called "o*esity hypoventilation syndrome"? My pulmonologist tried to refer me to an "o*esity specialist" and I shut that down immediately.
I'm having severe shortness of breath upon even mild exertion (but only exertion) and likely have sleep apnea as well. She basically explained to me, using her hands and arms to illustrate, how having extra abdominal adipose tissue makes it difficult for the diaphragm to function as it should. The "solution" is IWL, but I'm not convinced that works and would rather focus on healthy, sustainable habits instead, like increasing my activity level.
It's so freakin' hard to deal with doctors as a fat person and I didn't have the spoons to challenge her.
I'm so sorry you are dealing with this. As always, I'm not a doctor and I'm not giving medical advice. Here is what I found with some quick research into this.
. Hypoventilation syndrome is a real thing that can have many causes and happens to people of all sizes. When it happens to someone who is higher-weight there is a tendency to blame the patient's weight (in theory, the diagnosis of “obesity hypoventilation syndrome” can only be given after ruling out any other reasons, in practice that doesn’t always happen) and assume weight loss is the solution.
This is problematic both because there may be another reason for the symptoms and because weight loss rarely works long-term (including with the new weight loss drugs) and often ends with people regaining more weight than they lost (which, if the belief is that size is the issue, would actually exacerbate the problem).
If it were me, I would ask what a practitioner would recommend for patients of lower weights with this diagnosis. I would also make sure that any needed oxygen support is NOT delayed for a weight loss attempt but is begun immediately when needed. I would also ask questions about whether increasing strength/respiratory therapy might be helpful.
Here is some further information - though content note for weight stigma including stigmatizing terms.
There's some research about it here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2885790/
BMJ Best Practice also has some good information on this: https://bestpractice.bmj.com/topics/en-us/1153
Thank you for taking the time to type this thoughtful comment and provide links.
Thank you!
Thank you, I wish I knew how to share this with people I care about in a way that they would care about!
thank you!
Ragen, this is about the best thing ever. Thank you so so much! Would it be okay if I printed it to give to my GP when I have my annual in a few weeks? I'm worried about it because I've gained a good amount of weight since she saw me last year and I want to be prepared for whatever she throws at me.
I just re-read what I wrote and I like it that I used the word "good" in regard to my weight gain! The ability to see it that way to any tiny extent is all because of you and the other wonderful people doing this work.
Thanks so much Sharon, I'm so glad that this was helpful! Please feel free to print it out and use it in any way that supports you getting the care you deserve! I also have printable cards for what to say at the doctors office that might be helpful, you can find those here:
https://danceswithfat.org/2013/04/01/what-to-say-at-the-doctors-office/
And also the More-Love Don't Weigh Me cards here:
https://more-love.org/free-dont-weigh-me-cards/
Just let me know if I can help!